Emily Penn, who was diagnosed with Friedreich’s ataxia, a degenerative, neuro-muscular disorder, trains on a stationary bike at the Cycling Center of Dallas in Richardson. Penn will participate in Ride Ataxia, a bike ride and program of FARA benefiting research and awareness of the disorder, on Saturday.

Alexis Penn tries not to worry too much about the future of her 21-year-old daughter, Emily.

Instead, she and her husband, Richard, residents of Murphy, take it one day at a time, knowing that they’ll likely have to face greater complications as Emily’s disease — which affects her coordination, speech and energy — progresses.

Emily was diagnosed with Friedreich’s ataxia when she was a 15-year-old freshman at Plano East Senior High School.

“It was like a rug pulled underneath from us,” she said. “It affected all of us.”

Friedreich’s ataxia is a rare, degenerative, neuro-muscular disorder that shortens life and can cause a loss of coordination in limbs, fatigue, slurred speech, aggressive scoliosis and enlargement of the heart, according to the Friedreich’s Ataxia Research Alliance.

About one in 50,000 people in the U.S. have the disorder, according to the organization’s website.

“We do think about it,” Alexis said, “but we’re going to live each day the same way.”

When she was first diagnosed, Emily wanted to keep it quiet.

“I was afraid people would feel sorry for me,” she said.

A year after high school, she heard about and became involved in the first Ride Ataxia, a bike ride and program of FARA benefiting research and awareness of the disorder. The ride is now in its fourth year, and Emily will be riding the 25-mile route along with her mother.

“She’s really into fitness,” Emily said of her mother. “We’re a dynamic duo.”

Emily has been training at the Cycling Center of Dallas in Richardson since January 2013, when she began preparing for last year’s Ride Ataxia.

She rides a recumbent tricycle, with two wheels in the front and one in the back and a reclining seat that helps her keep her balance.

“A lot of people use them if they have back or knee pain,” Emily said.

The bike was donated by the Texas Irish Foundation and Richardson Bike Mart.

Now a full-time student at Collin College with plans to transfer to the University of North Texas in the fall, Emily has also begun speaking publicly locally about her disorder to raise awareness.

Kyle Bryant, founder and director of Ride Ataxia, said she is an example in the FARA community.

“Over the last few years, [Emily] has become the absolute force in the fight against FA,” he said. “We couldn’t thank her enough for being an amazing person that other people with FA can look up to and take cues from the positive things that she’s doing in her life.”

Bryant himself was diagnosed with FA at age 17.

Years later, in 2007, he and family members rode their bikes — he rode a recumbent trike — on a trip from San Diego to Memphis, raising funds to fight FA along the way.

He then joined FARA in 2009 and began creating single-day rides to raise awareness. Ride Ataxia now has six events across the nation; the Dallas event includes 6-, 25- and 50-mile routes.

For Emily, Ride Ataxia has been an opportunity to meet members of the FA community and make lifelong connections.

“They are courageous — the most strong and positive people I’ve ever met,” she said. “It’s an honor to be a part of it.”

Though FARA and other organizations are making headway, there is no treatment and no cure.

The disorder is progressive, and, though the degrees of progression vary, most patients who are diagnosed in their youth require mobility aids by the time they reach young adulthood.

For Emily, that meant having to transition to using a walker about a year ago.

“It was getting more noticeable,” she said. “It was a lot harder to keep my balance. I walked arm-in-arm with friends. Now I’m finally independent.”

Using a walker has been an adjustment, but the diagnosis was life-changing for the entire family, Alexis said.

“No one in my family had presented the symptoms,” she said. “It was a shock. It was a process. You learn and accept and move forward.”

The most difficult part of training and riding for Emily has been balance and coordination affected by the disorder, she said.

Where: University of North Texas’ Apogee Stadium, 1251 S. Bonnie Brae St. in Denton

For more information or to make a donation, visit rideataxia.org.

For more information about Friedreich’s ataxia or FARA, visit curefa.org.

WHAT IS FRIEDREICH’S ATAXIA?

Friedreich’s ataxia is a life-shortening, debilitating, degenerative neuro-muscular genetic disorder. Onset of symptoms can vary from childhood to adulthood. FA patients have gene mutations that limit the production of a protein called frataxi, which helps to move iron and affects energy production. Symptoms include a loss of coordination, fatigue, muscle loss, vision impairment, hearing loss, aggressive scoliosis, diabetes mellitus and an enlarged heart. There is no treatment or cure for FA.

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